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Re: Gammaknife, Tykerb...reality check
Good Morning!
In the spirit of "leaving a record" for others who walk this weird road in the future...
Steph...Oh my! Thanks for reminding me that the Decadron fatigue was on its way! Unbelievable...unless you've lived it!
So...
I'm now 3 days without steroids...completely weaned.
Fatigue...I haven't been so tired since chemo!
I also started back to work full time on the same day I stopped the steroids, so...that's a factor too.
I was so exhausted by the end of the first day, my core muscles literally ached...just from being "upright" all day. I came home...ordered dinner out...took a nap for 3 hours...then went to bed!!
I've also had a mild headache since stopping the steroids, but honestly, I don't think it has anything to do with my brain "issues"...it's hot here, so I think I may be a little dehydrated...and I'm tired...which can give you a headache too.
And...though my face is starting to deflate...I still feel like I look ridiculously "fat" when I look in the mirror. Sure hope that resolves before I meet my new students next week! Vanity, thy name is Denise!
Mostly...I am so excited to get my "real" life back...the one where I'm so busy being Denise, that I don't think about cancer trying to kill me!!
But, I have to admit...sometimes...my mind still wanders to that dark place...where the Tykerb isn't working...and mets are taking over my precious brain...killing me while I'm trying to get my life back. It's not a happy place... And, I never used to go there...ever. I'm blaming the steroids.
I'm hoping that when I'm not so tired all the time...I'll get my unfailingly positive outlook back.
In the mean time...thanks for checking in on me.
Echo tomorrow (fingers crossed...worried because I've been feeling kinds "winded" this week)
Check in with rad onc who did the gamma next week.
Happy Labor Day, Friends!
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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